The Disabling Effects of Spina Bifida

Tonight Mrs. Bremner and I attended a fund raising event for the Sophie’s Voice Foundation for Spina Bifida. The actor/actress pair Boris Kodjoe and Nicole Parker on behalf of the foundation donated $75,000 to the research program of Dr. Godfrey Oakley, who discovered the link between folic acid deficiency and the disabling birth defect of spina bifida while he was at the Centers for Disease Control, and who is currently on the faculty in the Department of Epidemiology at the Rollins School of Public Health, Emory University.

They also gave $20,000 to the Spina Bifida Foundation of Georgia, an organization that helps families learn how to deal with and care for family members with spina bifida. Someone at the gathering pledged to match $10,000 for each dollar donated at the gathering. The foundation is named after their daughter, Sophie, who was born with spina bifida.

Family of Boris Kodjoe and Nicole Parker

Spina bifida is a preventable and disabling disorder related to a deficit of the B vitamin folic acid in pregnant women that leads to birth defects involving the spinal cord and other structures. This can lead to life long problems with walking, bowel and bladder function, recurrent infections, and other issues. There is not enough folic acid in most diets to prevent this problem, and unfortunately by the time that someone figures out that they are pregnant the damage from folic acid deficiency is already done. That is why it is important to fortify the normal diet with folic acid to prevent these tragedies.

In the US, folic acid has been added to a variety of foods, so spina bifida cases are rare. Unfortunately, in most of the rest of the world, including Europe, there are no state programs of folic acid replacement, so there are many cases of children born with birth defects. At the gathering, Dr. Oakley pointed out that there were only 10,000 cases total of birth defects related to the terrible drug thalidamide that led to the formation of the FDA. Every year there are 120,000 new cases of folic acid deficiency related birth defects that could be completely preventable by additions to food. Unfortunately bureaucratic inertia prevents this from happening.